Race and ELSI outcomes in Asians and Pacific Islanders

This research aims to improve understanding of the Asian and Pacific Islander population in Hawaii participating in the Hemochromatosis and Iron Overload Screening (HEIRS) Study, and in turn our understanding of minority participants' reactions to and understanding of genetic testing. Using terms most suitable to the purpose and context of research as opposed to administrative categories for race and ethnicity has been recommended for public health research. The term 'Asian' has been found to be too broad and to mask important variations in beliefs and behaviors relevant to health and disease. Within the broad categories used in the HEIRS Study, Japanese, Filipinos, Chinese, and other Asian subgroups, would all mark the same 'Asian' category. However, these groups are known to differ from each other in the prevalence of health conditions, beliefs and behaviors. Specifically, differences between subgroups of Asians have been found in beliefs and behaviors related to genetic testing and counseling. In addition to known health related differences, there is also considerable heterogeneity in socioeconomic characteristics within Asian and Pacific Islander subgroups. These socioeconomic differences are particularly relevant to the HEIRS Ethical, Legal, and Social Implications (ELSI) outcomes of interest. The primary objective of this study is to assess differences in opinions about genetic testing and causes of disease using a measure with detailed Asian and Pacific Islander categories. This will be assessed among 2,761 HEIRS participants, the majority of which are Asians and Pacific Islanders. We hypothesize that there will be differences in opinions about genetic testing and causes of disease among participants originally comprising the same broad categories. We will also determine the proportion of persons who mark multiple categories and discover their primary identification. We hypothesize that at least 1/5 of participants will mark multiple categories and that among this mixed group, attitudes will be similar to those of the group with which they primarily identify. This proposal also suggests that a method of recognizing diversity among Asians and Pacific Islanders is to address groups in terms in which they self-identify. Toward this aim, a secondary outcome is to determine whether demographic questions that include more detailed, subgroup information affect the likelihood of research participation. We hypothesize that a failure to include detailed categories of Asian and Pacific Islanders on the initial HEIRS study enrollment questionnaire reduces the chance that persons of those groups completed the questionnaire.